August 2011 Monthly Message
Parkinson's disease and Parkinsonism: Are they the same thing? 
Federal Update: What's Going on in Washington 
Branded vs. Generic Medications in Parkinson's Disease: Does it Matter? 
Hettie Molvang is a Support Group Champion 
The Future of Translational Research at the National Institutes of Health:
NIH Director Francis Collins Releases Commentary Paper about New Research Center 
Parkinson's Action Network Welcomes Former Congressman John Spratt to its Board of Directors 
PAN joins the Alliance for Regenerative Medicine 
Join us for the 2011 Morris K. Udall Awards Dinner 
PAN CEO Amy Comstock Rick Featured on Comcast Newsmakers 
Parkinson's in the Media 
Michigan’s Hettie Molvang is a Support Group Champion
Parkinson’s Action Network Michigan State Coordinator Hettie Molvang hails from Traverse City, Michigan, and was recently named Distinguished Senior for the National Cherry Festival, a prestigious, annual award. She also received special recognition for her “service to a grateful State and Nation” by a local veterans group at the Festival for her work with the veterans community. Hettie teaches a class called "Personal Action Toward Health" at local senior centers and universities to assist those with chronic conditions in setting personal health goals. She also educates caregivers and staff at many of Michigan’s long-term care facilities and home health care groups about Parkinson’s disease.
A retired registered nurse and the mother of six children, grandmother to nine, and great-grandmother to six, Hettie got involved in Parkinson’s disease advocacy and family support when her late husband, Eric, was first diagnosed with the disease. Hettie continues to lead support groups where she works not only with people with Parkinson’s disease, but also with those with Parkinsonisms, amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease), and multiple sclerosis (MS). She is actively involved with and serves on the Board of Directors of the Grand Traverse Area Parkinson’s Support Group where she plays a vital role in supporting individuals and families living with Parkinson’s, and educates the community and local, state, and national elected officials about the need for research funding and support.
PAN’s Director of Communications, Carol Blymire, interviewed Hettie about her advocacy work, and her advice for fellow advocates, or those who are new to educating people about Parkinson’s disease:
Carol Blymire: Hettie, when and how did you first become involved with PAN?
Hettie Molvang: About eight years ago, I began learning everything I could about Parkinson’s disease. I became involved with PAN then through its action alerts when I found the PAN website, and then attended my first PAN Forum about four years ago.
CB: What are some of the more rewarding experiences you’ve had as an advocate?
HM: It is so rewarding to talk about what PAN can do for Parkinson’s because that in itself educates about Parkinson’s disease. I enjoy seeing people understand what Parkinson’s disease is all about, and learning how organizations like PAN can help. It is amazing how so few here up north understand the tremendous effort PAN makes for the benefit of the PD community and a better quality of life.
CB: What are some of the challenges you find in your advocacy and outreach work?
HM: We are so far north, that travel in our extended winters is difficult and distances to other cities are far. That will always be a challenge, especially since money is a consideration for everyone these days. But, thanks to technology, I use the computer and telephone when sending out PAN alerts and working with people who have Parkinson’s. It is also helpful to have news stories about Parkinson’s in the local media – that is one way we can reach more people without having to physically travel somewhere. Making sure people know we are available for them is sometimes a challenge in more rural areas, so we use the media, our website , rack cards in local libraries, information in doctors’ offices, speaking to other groups, and wearing our PD logo pins.
CB: Tell us a little bit about the support groups you help coordinate in the Traverse City area.
HM: We meet monthly at the Traverse City Senior Center, we have 135 people who we work with fairly regularly, and 11 new members just joined our groups in the past three months. Meeting attendance varies with the time of year: in the summer, we have 60-65 people attending the support group meeting; and, in the winter, it drops to 35-50 people. At every meeting, we have a guest speaker who is available to answer questions after his or her talk. Then, we save time at the end for socializing, music, and movement. We have a summer picnic every year, as well as a Christmas party with entertainment at the local Elks Club.
The people who come to our support group meetings and events are not just people with Parkinson’s, but also their care partners, caregivers, and family members. We also have some people with Parkinsonisms, ALS, and MS who attend, because there aren’t any resources or support groups for them in the Grand Traverse area. We are happy to welcome them to the group, and offer whatever support we can.
We see people with Parkinson’s in our groups from the point of first diagnosis to eventual long-term care facilities, and we visit them there when that occurs. And, the members of our support group come from all walks of life: most are age 60-90, and I have artists, physicians, teachers, researchers, and stay-at-home mothers. My colleague, Maxine Meach, formed the group 27 years ago, and she and I work together to assist every person with Parkinson’s in maintaining an active, quality life experience. The Parkinson’s journey is unique for anyone who has embarked on the discovery of symptoms that present with the age-old question: “Is it old age, or is it PD?” We’re there for them.
CB: What advice do you have for someone who is newly diagnosed?
HM: When they find their way to us, we give the newly diagnosed person with Parkinson’s a welcome bag with information from PAN, the National Parkinson Foundation, the Michigan Parkinson Foundation, and other organizations. We assure them we are there for them to call or visit. We provide information about local, state, and national resources, and we make sure they’ve seen a neurologist. If not, we help them get an appointment. And, we help them find occupational therapy, physical therapy, and other supportive health resources if they need or want it.
We encourage them to join our support group, and introduce them to other people with Parkinson’s who have offered to assist the newly diagnosed.
CB: What advice do you have for someone with PD (or a family member or friend) who wants to be more active in the Parkinson’s community?
HM: I have always urged political involvement, local and otherwise, and I encourage people to assist in any way they feel comfortable with our support group.
CB: What kinds of things can advocates do to build relationships with their elected officials to help educate them about Parkinson’s disease?
HM: I encourage advocates and people with Parkinson’s to have local, state, and national politicos come to meetings when possible. I also ask them to learn about what PAN is doing, and to get involved.
CB: Thank you, Hettie, for all your great work!